Monday, December 31, 2012 - Marc's New Year's Present

Tonight is New Year’s Eve and Marc wanted to share a little New Year’s present with everyone who has generously donated, prayed for him, and sent healing and good energy his way. 

If you haven’t already figured it out, Marc is one very determined guy.  There is no way a massive stroke and brain bleed is going to slow him down.  He’s not about to laze around on New Year’s Eve, either. 

Nope.  Not Marc.  Although he’s not quite ready to go dancing this New Year’s Eve.........

 Marc thought he’d walk on into 2013 in style! 

Marc and I would like to wish everyone a very Happy New Year!

May all your dreams come true in 2013!

Sunday, December 30, 2012 - New Worries

Marc called me this morning and announced that not only had he been cruising around in his wheelchair this morning but that he also shaved by himself in the bathroom mirror.  More small victories!

When I got to the hospital for visiting hours, he was back in bed and quite tired.  He decided that he’d rather wait for visiting hours to get into the wheelchair, rather than tire himself out before we get there to see him.  His room is cramped and he thinks it would be nice to visit in the atrium instead. 

I had printed off some sentences about life around the house this morning.  I wrote that I had baked banana bread so I could take him a piece.  I told him what the dog had been doing that morning and a few other things that he might find interesting.  I cut a strip off of a yellow file folder and brought that along as well.  I figured since he didn’t have O.T. on the weekends, we could still practice correcting his left neglect. 

I did what the occupational therapy assistant did and used the yellow file folder strip as his left margin so it was easy to find.  He did really well and the sentences ended up being a conversation starter.  We talked about how much he misses our dog, Ceilidh and just simply being home. 

The rest of our talk before other visitors started to arrive ended up going over old territory.  Finances.  Getting better.  Getting home.  How he is progressing.  He seems to need constant reassurance that everything is going to be okay.  

Marc also told me that he’d woken up continuously in the early morning hours and would turn on the light to look at the clock.  We talked a lot about that.  He said it was keeping him up but that he couldn’t stop worrying about what time it was and how much longer he had to sleep.

He wanted to talk to Ashley, who was luckily on her way in to see him.  He wanted some tips on what to do to stop being so anxious about these things and tips on obsessive compulsive disorder, which he is wondering if he has.  Ashley is planning to go back to school for counselling and Marc values her opinion in this area.  So do I and I was happy to have her help.  I’m great at helping with physio and O.T., but this is definitely up Ashley’s alley.    

After a good talk, we decided that we should look into this.  The anxiety can’t be good for his stress levels and stress is the last thing he needs.  Marc has always been a “do it yesterday” kind of guy and he tries to tackle everything himself.  Now that he’s in bed and not able to do all the things he would normally do, it’s really bothering him.  I’m not sure how much of this has to do with the stroke, but at least it’s something we can explore.  

I talked to the nurse about it and they are going to look into getting him some help for it.   All I want is for him to have some relief from worry. 

He has a long road ahead of him and the smoother we can make the journey, the better.   

Saturday, December 29, 2012 - The New Hairdo

Today I found a handsome man awaiting me.  He had a new hair style and was looking pretty sharp. 

While I was at home last night, I got a text message from one of Ashley’s friends, Taunya, who happens to be a hairdresser.  I’d forgotten that she was going to go see Marc last night at the hospital and get rid of his half faux hawk. 

She attached these pictures:

Marc was happy to show off his new look.  I'm so grateful to Taunya and another friend, Ellen, who came to help.  They made him feel really special. 

Marc had several visitors today and was in great spirits.  He told us that he had sat in a wheel chair for lunch and then had toured the halls of his ward by himself.  He uses his right hand to propel the wheel and his right foot to steer.  There were no other rehabilitation patients or nurses harmed during his travels, so we’re calling it a success. 

The physiotherapist had left us some exercises to do while Marc is in bed this weekend and he was eager to get started.  The first quiet moment we had, I put him through his paces.  He did very well, but I think he’s going to feel it tonight. 

Marc had a question for me.  He was wondering if I had any ideas to help him fall asleep, so I taught him the relaxation exercises that I use when I have trouble sleeping.  I showed him how to take three slow, deep breaths and slowly release each.  Then, starting at the toes, concentrate on each muscle from your feet all the way to your head and picture each muscle relaxing. 

If you make it all the way to your head without falling asleep, you can also work on any areas of your body that are especially sore or in need of healing.  In Marc’s case he has a lot to choose from. 

I also suggested that he picture nice green, healing light coming into his body and washing through the sore areas or places that need to heal.  I learned to do this many years ago and I swear it helps me heal in record time. 

I truly believe that healing is 90% mental and the more we can do to help ourselves heal, the better.  If nothing else, Marc should be able to drift off to sleep feeling relaxed. 

If there’s one thing he needs right now, besides that great new hairdo, it’s a good night’s sleep. 

Friday, December 28, 2012 - The King Still Stands

I arrived this afternoon just as Marc’s physio session was starting.  We went to the therapy room and they worked with him while he was sitting on the bed in there.  He sat at the edge and they taught him to scoot back and forth and side to side.  Something so simple that we take for granted took intense concentration for Marc. 

They also had him semi-stand with his hands braced on a step ladder in front of him.  He was to concentrate on keeping his body at mid-line and use both legs equally to push up into a semi-standing position, hold for a few seconds and then slowly lower onto the bed. 

After that they worked on some exercises he can do himself while lying in bed this weekend.  I took notes and they gave me a sheet of paper with the exercises on it so I can help him. 

The occupational assistant, Karen, who happens to know a friend of mine, then put him through some paces.  Using a workbook for left neglect patients, she had Marc read some short sentences.  She held a yellow paper along the left margin and asked Marc to find that margin every time he started a sentence.  With prompting, that visual clue helped Marc compensate for the left neglect and find his starting place and all the words that make up each sentence. 

He also circled the names of various colours written on a page amongst other words.  He showed that he was able to use strategy to find the words he was looking for.  He is learning that even when he thinks he has found all the words, looking further to the left usually reveals more words that he hadn’t been aware of before. 

One interesting exercise involved copying a block pattern that Karen put to the left of his tray.  He was to look at the structure she had built and reproduce it.  This picture shows his second attempt, with Karen's blocks to the right of he picture.  In the first attempt, he got it right, but it was turned to the side.  This time he missed a black bottom block and still had it turned.  Karen said that was his perception that was proving difficult.  Very insightful. 

He did very well using plain blocks, although it would be in the correct position from any side.

After his therapy and a visit from his parents, Marc showed me the gorgeous, hand-made king chess piece that Robbie had left for him last night when he visited.

Before the stroke, Robbie and Marc played chess daily on-line.  After the stroke, Robbie wanted to bring in a king to the hospital to leave for Marc to see when he woke up, but there was simply no place for it in critical care. 

In chess, a king laid on its side signifies the end of the game.  As long as a player’s king is still standing, the game is still on.  Robbie said that Marc would know what that meant.

Marc said, “My king is still standing.” 

Indeed it is.  And it will remain standing.   

Thursday, December 27, 2012 - Knowledge is Power

Marc was in good spirits when I arrived this morning.  I turned around to get him something and when I turned back to his bed, this is what I found:

He had sat himself up at the edge of the bed.  While I was very impressed, I was also worried. 

“Are you allowed to do that on your own?” I asked. 

“The nurses helped me sit here this morning to eat my breakfast,” he said. 

His physiotherapists arrived just after that and I mentioned that he had sat up at the edge of his bed by himself.  Busted.  They confirmed my suspicions that this was definitely not okay.  They explained to Marc that he needs to learn the word “whoa”.  Just because he thinks he should be doing something and just because he can do something, he needs to think, “Whoa, this could hurt me if I don’t have someone there to help me." 

Physio put him through an assessment and then got him into a chair. Off we went for an OT assessment.  While physiotherapy works on large muscle movement and focuses on the mobility of the patient, occupational therapy focuses on function and the fine motor skills needed to perform daily tasks. 

I sat in on the OT assessment and found it quite fascinating and insightful.  One of the tasks required Marc to copy a picture of a flower.  He drew the right side of the flower only.  He did this twice.  It was clear that he simply did not see the left side of the picture and therefore couldn’t reproduce that side.  I now understood his difficulty with telling time on the left side of the wall clock yesterday. 

When I went home tonight, I Googled the terms that I’d heard the therapists say today while assessing Marc.  The first one, hemispatial neglect described Marc’s difficulty with seeing things on the left side of his food tray.  He was unaware that anything was there. 

The second one, hemianopsia, explained decreased vision in one half of one or both eyes.  The picture in the link of left homonymous hemianopsia showed what I believe is happening to Marc.  Unless I’m mistaken, he is actually seeing half a picture.  No wonder he drew half a flower!  That was what his brain is telling him is before him. 

Clearly I need to research this more in order to be able to really help Marc through this challenge.  The occupational therapist recommended a book called “Left Neglected” by Lisa Genova.  It’s about a woman who suffered a right brain injury in a car accident and it follows her healing journey from her perspective.  I’ll be visiting Chapters as soon as I can to pick up a copy. 

Knowledge is power.

Wednesday, December 26, 2012 - My New Hero

Marc is my new hero. He actually called me today with good news.  He had remembered how to work the phone after practicing yesterday.  He asked me to bring pajama pants, socks, t-shirts and running shoes because he will be wearing them for physiotherapy.  He said he met his new physiotherapists today and they were impressed with his progress so far.  

Marc had called while I was on the way to the hospital, so I turned around to go pack his bag.  As I was driving home, I thought to myself, “Is it possible that he might actually be walking soon?”  The idea was sparked by his request for running shoes.  I had just been looking at them in the closet the other day, thinking that it would be a very long time before he was able to walk again. 

After I packed his bag and was about to head out the door, I happened to look down at the writing on the top of his bag:

There was my sign.  It really IS possible.  Even his gym bag was telling me so. 

He also has a new lift to get him into a chair when he’s working with his physiotherapists.   

He said he sat up for about 20 minutes today.

He also read the board across from his bed.

Today we discovered that Marc can no longer tell time on the clock on the wall across from his bed, so I worked with him to figure it out.  He could get the hour but the minute hand was proving difficult to figure out.  Once he gets past 20 after the hour, it gets quite challenging.  I showed him how to count by 5's for each number to get the minutes and by the end of the day, he did it perfectly.   We were amazed at how quickly he relearned that skill. I'd catch him staring at the clock quite often and he said he was practicing.

Marc is my hero because he just took it all in stride, didn't get frustrated and kept working at it until he got it.  He also mastered the television today. 

I couldn’t help thinking about the words on his gym bag:  It's Possible!

Tuesday, December 25, 2012 - Christmas Day

Christmas turned out to be very special this year, after all. 

I called Marc’s floor in the morning and the nurse said he’d slept well.  Despite visiting hours being from 2:00 p.m. to 8:00 p.m., we could come in earlier since it was Christmas.  I let everyone know and then headed to RVH.  

Marc was so happy to see us today.  Ashley and Robbie ordered him a television and Robbie spent ages teaching him how to use it.  Ashley’s friends Taunya and Chris came by for a while, as well.  Taunya is a hairdresser and told Marc that she will come in soon and fix his hairdo. 

Marc’s parents joined us later on and we all spent a nice day talking about how far Marc has come. They hadn’t seen him in a few days so I’m sure they noticed quite a change.  He showed off his arm and leg movement for them and told them he was getting better.    

Marc is giving a thumbs up for his new room.  Note that he is using his left hand!

The bench seat for all his visitors.

 

After everyone left, I helped him with his dinner.  We were surprised to see a really nice plate of turkey, mashed potatoes with gravy, stuffing and peas and carrots.  He made me try a piece of turkey and it was delicious.  I felt like we were sharing a Christmas dinner after all. 

He was ready for sleep after that feast so we spent a few minutes practicing his television buttons.  Once he felt confident that he could turn it on and off by himself, I kissed him goodnight and headed for home. 

Our family had decided early on that we were going to postpone our Christmas this year until Marc is out of the hospital.  We will make it an extra special celebration once he is home and ready for some fun. 

We did get together for dinner, however.  The big turkey dinner will wait, but for tonight Robbie and Ashley made a really nice dinner and brought it to our house.  I picked up my brother, Marv, and along with my mom, we sat down to eat. 

After dinner Chris and Taunya came by the house and we ended up playing a game of Apples to Apples.  I realized part way through the game that I really needed some fun at this point. It had been so long.  I was grateful for the company.   

It wasn’t the same without Marc, but I have no doubt that he’ll be home before we know it and will be playing our favourite board games once again. 

Monday, December 24, 2012 - Our Christmas Eve Present

Ashley and I arrived at Sunnybrook to find Marc most upset that he hadn’t gotten word of his transfer yet.  He said the neurosurgeon was in to see him and Marc told him that he was worried about not getting back to Barrie.  The doctor told him that it could still happen today but that with Christmas, it’s hard to tell.  He assured Marc that he would be going as soon as possible.  The nurses felt that it would likely be after the Boxing Day before he could return to Barrie.

Marc also told him that he was frustrated that he wasn’t able to do more for himself.  He said the doctor told him that he was doing extremely well and that he shouldn’t feel frustrated.  He told Marc that he had made a remarkable recovery so far and would keep getting better. 

He wouldn’t stop stressing about going home.  He was worried about us driving to see him all that way. He was worried that he wouldn’t get better as fast at Sunnybrook.  It went on and on and nothing I said seemed to make a difference.

His physiotherapist arrived and was amazed at his progress.  Marc was able to get his left arm over his head and lift his left leg right up.  Even his vision had improved a bit. But instead of being pleased, Marc spent the whole session asking her the same questions he’d asked us about going to Barrie. 

By the time they were finished, I was in tears.  I could feel how sad and upset he was and it was breaking my heart.  The more I tried to explain that he needed to let it go and not worry about it, the more he went on about it. 

Ashley came back into the room then and I left for a quick break and to get myself together.  When I returned, Marc and Ashley were having a talk and he told me that he was going to relax and calm down about returning to Barrie.  I don’t know what Ashley said to him, but it worked like a charm.  The patient whisperer strikes again. 

We spent the rest of the visit talking about what had really happened to him and how far he had come.  A week ago today, he could barely move his fingers and his leg didn’t move at all.  Two weeks before that they still weren’t sure he’d survive. 

We told him about CRCU, the machines and the nursing care.  We told him about his progress and the small victories that we’d celebrated.  He told us about his wild dreams and how real they seemed.  We were able to assure him that they were just dreams.  By the time we were ready to leave, he was much more settled. 

I was feeling really lousy on the trip home.  Christmas is my favourite time of the year.  I love the excitement, the carols, the decorations, the fun, the food and being with my family on the big day.  Marc would get equally excited the week of Christmas and our Christmas Eve’s together were so much fun.  We’d be so excited we could barely sleep. 

This year I just wanted Christmas Eve and Christmas to go away.  I felt no joy.  Having Marc so far away and so upset about not being transferred was unbearable.    

Just as I arrived back in Barrie, I got a phone call from his nurse.  A bed had opened up at RVH and Marc would be transferred this evening.  I was ecstatic.  I posted on Facebook that Santa had come through for us and was delivering Marc to Barrie for Christmas.  I was flooded with replies of support from all who had been following Marc's journey via my updates.  I have no doubt that all those prayers and the good energy being sent helped bring him home, just as it was helping with his healing.

It was 8:00 p.m. when he left Toronto and I arrived at the hospital for 9:00 p.m. to await his arrival and get him settled for the night.  He is in the new part of the hospital and I was completely lost, despite finally finding his ward.  His bed is in the Respiratory ward on 3GA, Room 19. 

I arrived just before he did and was given a seat in the patient lounge.  Not 10 minutes later, his nurse came to get me.  I felt like I was going on a first date. 

There was Marc, looking happy as can be in a private room that looked more like a hotel room.  It is huge and has a bench seat along the window wall.  He said the ambulance trip down was great and that the EMT’s even acted as tour guides, describing what they were passing.  I was able to thank them personally as they were packing up to leave.  What angels they are to have taken their Christmas Eve to drive Marc back “home”. 

I left the hospital by 10:00 p.m. so that Marc could get some much needed rest.  My heart was singing with joy and I couldn’t stop smiling.  I got to spend Christmas Eve with my love after all and I slept well for the first time since December 8^th, wrapped in the Christmas Spirit. 

Sunday, December 23, 2012 - The Patient Whisperer

I feel like today was my lowest day in a long time.  I think it’s a combination of stress, grief, worry, exhaustion and the travelling back and forth from Toronto.  Ashley had a day off work and came down with me but I'm afraid I wasn’t much fun.    

I’m starting to feel like a fraud.  Everyone keeps telling how strong I am but I felt anything but today.  I want the transfer to Barrie to happen.  I want Marc to stop stressing about finances.  I want Christmas to go away since I can’t celebrate my favourite holiday this year.  I want to stop crying.  I want life to be back to normal.  Too many “wants” left me feeling very selfish. 

Ashley turned out to be the magic answer to Marc obsessing over finances.  She stepped in and talked to him when I was out of the room.  By the time I got back, Marc told me he was okay now and that he wasn’t going to worry about home and our finances any more.  Ashley had very calmly listened to him and explained that worrying about it was just causing more stress on him and on me.  She told Marc that I was handling everything just fine. 

When we went for lunch, Ashley said she had just remained calm with him and explained that he didn’t need to worry.  I was stunned.  I’d been doing that all week long, day in, day out and it hadn’t worked.  I think Ashley was bang on when she said, “Marc can get away with not listening to you because you are with him every day.  It has more of an impact when someone else says you need to calm down and let it go.”

Ah, my new secret weapon.  I had my very own “patient whisperer”. 

The afternoon was much nicer.  I had pulled up my big girl panties and Marc found new things to talk about.

At one point, I made him identify everything on the tray beside him.  He couldn’t see the spoon in the furthest left position until I picked it up.  I asked him to watch it as I put it down and just before I put it on the tray, he said, “How did you make it disappear like that?”   He looked at me like I was David Copperfield.  I’m sure he was wondering when I’d been able to fit in magic lessons. 

While today wasn’t my most shining moment, it did make me resolve to calm down and let it go myself.  I’m realizing that I don’t have to be perfect through this. I will try and allow myself to be human.    

Give me strength.

Saturday, December 22, 2012 - Learning to Let it Go

Marc was really tired today.  He didn’t even want to get into a chair and visit the lounge.  We sat and talked most of the time.

He’s starting to understand that this is going to be a long healing process.  He keeps saying, "I wish I'd just gone to sleep earlier that night. Then I'd have woken up in the morning and everything would be normal." I tried to explain that it doesn't work that way and that if he HAD fallen asleep earlier and then had the stroke, we wouldn't be sitting here now. He's been saying this for several days now and it breaks my heart.  He doesn’t understand that it wasn’t one thing that caused the stroke, but a culmination of high blood pressure and other factors. 

Marc also seems to be fixating on finances.  He asks the same questions every day.  It’s like the movie “Ground Hog Day” every time I see him.  I have to reassure him that I will handle everything and that I’m more than capable of doing so.  His job is to relax and focus on healing.  He’s just so used to doing everything that relinquishing control is difficult.  He has always felt that it’s his job to take care of me and everything else around him.  I’m worried that his stress will cause another stroke and by the time I get him calmed down about it, I’m the one who is a mess.  I end up crying all the way home.  I wish I could find a way to convince him that everything will be just fine. 

The physiotherapists and occupational therapists don’t work on the weekends, so Marc did his own exercises today.  He practiced moving his left arm and leg.  I’m still seeing progress every day, which is so nice. 

The highlight of Marc’s day was a visit from his sister, Lucie and brother-in-law, Mike.  They had come down from Sudbury to see him and arrived with his niece, Natalie after I had left.  I’m sure the visit did him and Lucie a world of good. 

Friday, December 21, 2012 - The Wait for a Transfer Begins

Just after midnight tonight will mark the two week anniversary of Marc's stroke. He has come so far in that short time and for that I am forever grateful.

He had a good day today and was up in a wheelchair once again. I think his left hand had even more movement today than yesterday.  He didn’t want to stay up too long but we did visit the patient lounge again for a while. 

We find ourselves sorting out his memory most days as he struggles with things that just happened. I had to convince him he didn't sleep through my visit yesterday and miss it and that he didn't have brain surgery yesterday. He did know that it was the 21st today but thought it was Sunday. Baby steps.

The best news today came from his neurosurgeon. He is happy with the swelling and that the leaking has stopped and has given the go ahead for him to be transferred back to Royal Victoria Hospital in Barrie.  The wheels are in motion and once they have a bed, off he goes. I've been warned it can take a few days, but I'm hoping that Santa can give him a lift in his sleigh and have him there for Christmas. That's the next best thing to having him actually home.

I was going to see if I could bring our Golden Retriever, Ceilidh, in to see Marc this weekend.  I found out earlier in the week that visits from pets are allowed if their shots are up to date and they’ve had a bath.  Two days ago, I returned home to find a Vaccination Certificate on my counter.  After some digging, I found out that my friend Christine had dog-napped Ceilidh during the day and took her to our vet to update her shots for me.  I was waiting for a day when I wasn’t going to Toronto alone, in case Ceilidh was freaked out by the hospital.  Now with news of repatriation to RVH, I figured I should hold off.  I hope RVH has the same pet policy. 

I told my daughter on day two that all I wanted for Christmas this year is Marc.  At that time, I meant that I wanted him to live.  Now all I want for Christmas is for him to be in Barrie. 

Thursday, December 20, 2012 - Good News, Bad News

It was a good news, bad news day. The good news is that Marc was lifted with a sling and into a wheelchair for the first time. His balance isn't great yet, but will come in time.  We even got to go to the patient lounge down the hall.  

The Occupational Therapist found us there and asked if she could do an assessment while he was sitting up.  This is where the bad news comes in.  The assessment confirmed that Marc has trouble with short term memory.  He also had trouble with the math questions she asked. He thought he did great, but sadly no.  My heart sunk.  Marc is a mortgage agent.

They also figured out that he has "holes" in his vision on the left, which I already suspected. They call it “neglect” and suggested we get him to do as much on the left side as possible to get him scanning for things. They also cautioned that he would need to be reminded to scan his tray during meals or he would only see what is on the right side of the tray and miss half his dinner.

I have to remind myself that we are only just coming up to the two week mark.  His progress so far has been remarkable. I'll keep the faith that this too shall pass in time.

While we were in the lounge sitting by the Christmas tree, I asked Marc if he wanted me to take a picture to show everyone how he is doing.  He loved that idea because he knows how many people are pulling for him. 

He blew a kiss and said, “Thank you to all my fans and thank you for all the prayers and the healing and the financial support.  I love you all!” 

This hairdo is what all the cool stroke patients are wearing these days. 

 This is the incision where they did the surgery.  The bone under this flap of skin has been removed and will be replaced when the swelling completely subsides in about 6 months to a year. 

Seeing Marc sitting in a wheelchair blowing kisses to his supporters really put things in perspective for me today.  I can’t help but think how differently this could have turned out.  He’s come so very far already and I have no doubt he’ll go the distance with this. 

Wednesday, December 19, 2012 - Real Food

Marc had a good sleep and was feeling much better today.  The first thing I noticed was that he got his feeding tube out...or rather he took it out last night by mistake and they couldn't get it back in.  He seemed pleased with himself and I wondered how much of a “mistake” it really was. 

People who have suffered strokes tend to have difficulty swallowing due to the weakness on the effected side of the throat.  Choking is a real danger so they must have their swallowing assessed by a speech pathologist.  If the patient coughs while eating, it is deemed too dangerous to allow them to eat and feeding continues via a feeding tube until they regain the ability to swallow properly.  Luckily Marc passed the swallow test by the speech language pathologist this afternoon so he is able to eat.  The speech pathologist gave him a piece of canned peach on a spoon and you’d think it was the best thing Marc had ever eaten.  He ate a few spoonfuls and a cracker and was full. 

The only concern is that he doesn't realize if food is still in the left side of his mouth.  The speech pathologist told him he needs to swish his mouth with water when he is finished eating to make sure the food is all gone.

I've asked the nurse to speak to the doctor about his short term memory loss and his vision. If I am sitting to his left, he doesn't see me when he wakes up. I have to say “hi” and then he finds me.  His depth perception is off as well.  He’ll reach for things and go right past the object.  He also tends to forget names and things that have happened that day.  Fingers crossed that this is all temporary or that there are exercises we can do to correct both.

I have to keep reminding him that he has a long way to go before he can come home. He thinks it's as simple as physio checking out our house and making a few recommendations. I wish it were that simple and that I could just take him home with me when I go. 

It’s hard to take things one day at a time when all I want is to know the extent of the deficits are so we can start working on them.

Today he conquered eating real food.  Tomorrow, the world.

Tuesday, December 18, 2012 - New Room, New Anxieties

I was relieved to find out that the ward that Marc was moved to is actually a step down unit after all and there is one nurse per three patients.  They also have an “observer” who sits in the room to monitor each patient and do minor care for them.  They are watched at all times, which is a huge relief. 

He was on D Wing on the 5^th floor, room 26.  Sunnybrook is huge and the walk from the elevator to D Wing seemed to take forever. 

I didn't arrive until around 3:00 that afternoon.  I had appointments I had to keep in the morning so I had called this floor first thing so the nurse would know to remind him that I was going to be late.  The only day I'd been late arriving and it had to be the day he was in a new room. 

Marc was very upset when I got there.  He had a hard time sleeping and seems to be having trouble making sense of the noise.  He thought there were chickens in his room but it was just one of the machines making a weird noise.  I helped him figure out what most of the noises were and that seemed to settle him. 

The rooms at Sunnybrook are really small and cramped.  You can barely fit a chair beside the bed.  I squished myself in there and held his hand while he told me about the dreams he’d been having.  He was still dreaming about the people with the lights coming out of their heads who build statues and he had also dreamed that there was a little girl who needed to be rescued.  When he reached her, she disappeared.  I asked where she had come from and he said, “From the children’s ward.  I’m sure she was real.” 

This visit seemed to be all about calming Marc’s nerves.  The nurse said that she would give him earplugs to sleep tonight if he needed them and would get the doctor to prescribe something to help him sleep. 

Once he was settled and happier, I made my way home, crying most of the way.  Mama said there’d be days like this. 

Monday, December 17, 2012 - "I'm Going to Sue"

Marc clearly remembers that he is supposed to be going to another room and is getting impatient.  He also still really wants to go home.  When I arrived this morning he said, “Okay, I’ve had enough of this.  I told the nurses that I’m going to sue them if they don’t take me down to the check-out counter.” 

I couldn’t help myself.  I started to laugh.  I could see him watching me, trying to figure out what was so funny in light of his upcoming litigation announcement.  “Honey, you aren’t suing anyone. The doctors and nurses have been taking excellent care of you and you have to stay here to heal.”

“You don’t understand,” he said earnestly.  “They make me sleep on the floor.” 

I still hadn’t recovered from the news that we were embarking on a law suit and I laughed again.  I could visualize them tossing Marc onto the floor as soon as I left and putting him back in bed before I arrived in the morning.   

“And if you think I’m joking, I’m not.  They were mean to me at RVH, too,“ he said.  “They made us all go into a room and they tethered us and gassed us.”   

The confusion still seems to be in full swing at this point.  Luckily his leg and arm cooperated more today and helped to keep me hopeful. 

As I was leaving, one of the nurses told me that when he is moved into a ward, he’ll have to learn to use his call button and that it would quite an adjustment for him.  She said that the nurse in the ward will have six patients instead of the two I had originally been told. 

That night as I walked in the door, my cell phone rang.  It was the nurse telling me that they were moving Marc to a ward.  I barely slept that night, worried that Marc was now all on his own with no one to watch over him.  I wished I was there with him to help him through the transition. 

Sunday, December 16, 2012 - Confusion

I walked into the unit this morning expecting to see the same Marc from yesterday.  Instead I was greeted with by very worried Marc. 

“Where the hell have you been,” he demanded.  That was definitely not like Marc.  He would never say something like that to me.  He also wanted to know if I’d received the email he’d sent me.  I hoped this was still considered normal.

When I asked if he had slept all right, he said that he was having trouble sleeping because there were people with lights coming out of their heads and there were statues behind them that came to life.   They kept him up all night. 

I found him to be very tired today.  I think we wore him out with so much activity yesterday.  It was clearly too soon for him to try and be the life of the party.  I was happy to read while he slept most of the time. 

When Marc is awake, he has one thing on his mind.  He is adamant that he is going home and if we could just get to the elevator, we could leave.  At one point he yelled out toward the nurse’s desk, “Excuse me?  Can we borrow your elevator?”

He told me that they wanted me to take him back to the hospital tonight.  When I told him he was already at the hospital, he said, “I am?”   

He later asked if there were two Sunnybrook Hospitals.  He apparently thought he was in the Sunnybrook in Barrie.  I had to explain that the hospital in Barrie was called Royal Victoria Hospital and that he was in Sunnybrook in Toronto. 

Later still he told me that he’d been watching the guys do construction.  “What guys?” I asked.  “What are they building?”    

“They were putting in a new counter but they did it wrong and had to take it all out again,” he said.  He was looking toward the nurse’s counter with great interest, as if remembering the whole thing. 

I let him sleep while I went for lunch.  When I returned he was awake and happy to see me. 

“I’m glad you’re here!  They said they want me to go home with you tonight.  They are short of beds and they need mine.” 

The highlight of the day was when his left leg moved ever so slightly when I asked him to move it.  His hand seemed to be moving more as well and he was able to manage a weak squeeze. 

We take the small victories when we can and hope that this confusion is temporary.